Appointment with gp later today re ds nearly 3... support / help / opinions welcome! re autism (?)

[Fairylea]

Hi, not sure what I'm looking for really. Just need to talk.

Ds is my youngest child, I also have an older child, a dd who is 12. Ds is 3 in June.

For some time now, since birth I guess in some ways, dh and I have had concerns that all is not standard with ds - whatever standard or normal means (!) He's always been very high needs and has never once slept in the buggy or car seat from the word go. He has always hated any kind of social noises - so cafes and even soft play areas can be a total nightmare.

I've taken him to toddler groups and had to leave half way through because he will have a complete screaming fit and put his hands over his ears and say "too loud" over and over.

In spite of all this - and probably why we have left things this long- he is a very happy little boy at home and pottering about as long as we stick to a rigid routine (with a nap at home in his cot in the dark for 2 hours every day) and he has quite good language and understanding.

Other people in our families have begun to notice something is perhaps a little bit different - they will say things like "Oh it will be good for him when he gets to pre school and can get the help he needs" - clearly suggesting he needs additional help.

I'm feeling quite lost. And wandering between feeling I'm being silly and there's nothing wrong and feeling bad I should have taken him sooner, I have no idea.

I'm a sahm so I feel like I understand him (and the way he thinks) very well but nursery etc is looming closer and the thought of someone else trying to decipher him fills me with dread.

I have made an appointment with the gp for this afternoon and I am feeling quite apprehensive.

Help and thoughts appreciated.

My DD sailed through her 2 year check - if anything you'd have put her down as gifted then.

Thanks mummytime that's comforting as at least I don't feel so bad that I've missed something or should have made more of things then.... I really did feel he was capable of, if not demonstrating, all the milestones and he still is in some ways he just seems to be a bit different!

I've noticed that a lot of his motor skills seem to be behind - he can't go up and downstairs without us helping him, although he manages a few steps on the toddler climbing frame at the park. Big stairs he can only crawl up and coming down we have to hold his hand. He's never liked ride on cars or rocking horses or anything like that - he will just flatly refuse to sit on one. But then I'm not sure if it's the dislike of them that's preventing him doing it or if it even matters if he can't do it? I haven't the foggiest really.

If we got him a scooter or a balance bike he wouldn't even want to go near it. When we take him to the soft play place where they have a little traffic rally with those little ride in cars he won't go near them at all. If we help him on to one he just gets straight off :) !

I think I might keep this thread going if nothing else for me to use as a bit of a reference point. I'm not good at sitting and writing a diary so this is a good place for me to get some feedback and let my thoughts out.

Thanks all.

Funny, my ds doesn't do any ride on things either! He won't sit on knees like riding a horse either. I've assumed it was uncomfortable for him. We also still have to hold ds's hand coming down stairs and has a much younger way of going upstairs. But I also need to take him to get him checked out for hypermobility too.

That's interesting antiquity. Ds is exactly the same with the knees thing too. I've never considered hypermobility in our case before because ds is so active otherwise and would spend the whole day walking if we let him (!) but I might look into it.

We went to the park this morning and there was another little boy there who was much smaller than ds (who is tall for his age though) and I assume younger and he was whizzing around very confidently on one of those balance bike things, whizzing all the way from the top of a small hill to the bottom without touching the floor. The funniest thing was that ds wasn't even the remotest bit interested, he just wanted to look at the "fire alarm buttons" - red buttons on the climbing frame that link the frames together. He's decided they look like fire alarms! He sat there touching them and looking at them for most of the time and had a couple of gos on the slide but seemed to do that more to appease us! :)

I'm confused about possibly claiming Dla as well. Maybe that seems a bit forward considering we are right at the start but I've been doing some research and it seems that you should claim as soon as possible? I will wait and see the community paediatrician and go from there I think. We are literally on our knees financially as due to our concerns over ds I've not returned to work and can't really do so with everything going on right now. Just looking into everything I guess. ...!

ds also has clicky joints and is sort of a bit floppy in the hands and ankles and his arms go beyond 180 degrees. He loves running around a lot, but he falls quite a bit more than seems right, more so when he's tired. Until the clicky joints I didn't really notice the other stuff though!

I am only just applying for DLA and I do regret not doing it sooner. I just finished my degree right before he was born and intended going into teaching or getting some kind of decent job after years without but it's not worked out like that due to ds and it would've helped a lot. It's not forward, it's if your child needs more help than the average child of the same age. I have a DLA help thread in sn chat which may help you formulate your thoughts on it. Certainly the fact you have to have a rigid routine is a big factor.

LOL at appeasing you by going on the slides!

Hi Fairylea, my first time on these boards, but I have lurked for a few weeks. We're in a similar situation - DD is four and has just been referred to a paediatrician by her preschool for suspected ASD.

Not sure what the future holds in terms of assessments etc. We've had a tricky week with DD (off preschool last week due to illness and her anxiety when she was better and therefore going back to preschool was awful). I've been unwell too and the stress is getting to me.

Thank you polter and antiquity. ... thats interesting about the dla because he does definitely need more help than an average child of his age. I was looking at things on the autism org website about applying and a lot of the examples they've given are very true for ds. I will have a look at your thread antiquity.

Brilliantine - hello! It's all very stressful isn't it. Lots of hand holding from me here. I've been doing a lot of lurking on here for a while too. It's good to be able to post and get some feedback and support.

It's been a difficult day today. Dd had a party she had to go to right at the time ds would normally have his "rigid and can't be moved" nap time! So I had to bundle him in the car and drive dd to the party which didn't take long (maybe 10-15 mins drive) but ds was very upset and annoyed and all the way home kept asking if we were nearly home! He then had his nap when we got in so calm was restored!

When he woke up he spent the rest of the afternoon playing with some potatoes and onions from the veg drawer which he enjoyed lining up in a perfectly straight line (!) And then he looked at more road signs and toilet signs and whatever other signs he could find on my phone for a while.

I think some of the problems I'm having is that dh and I seem to disagree a bit on whether he does have a problem or not. Dh seems to be looking to prove that he doesn't now and I am feeling that he does. I think I am changing my responses and expectations to assume that he does - I am remaining calmer when he has a major tantrum, looking to understand and calm the situation and giving a lot of over exaggerated praise every time he communicates well or does something well. Dh seems to be going the other way and seems almost annoyed with him getting upset about anything and seems to be being harder - which isn't like him at all. It's like the thought of having it confirmed that ds may have issues has made him feel he has to disprove it. Hmmm. I'm not feeling best pleased over dhs handling to be honest and we're having rows over it. When he gets cross with ds (which isn't majorly cross by any means, he's not an ogre just more cross than me!) of course ds gets more upset and out of control and so the whole thing gets worse.

Difficult times. :(

Oh Fairy, much of what you have said rings true for us. We're both very much "attached" parents, but DH canget very frustrated with DD's behaviour and has said that maybe we should handle things differently I.e. telling her off when she gets shouty/angry rather than keeping calm and offering a hug.

It's so, so draining though. I got all shouty the other day when it had already taken an age to do teeth (that's a thread in itself...) and get dressed and DD started to meltdown because I didn't go down the stairs properly .

It's all so frustrating at times isn't it :( I do try and be patient like everyone else but I guess we're only human and I have the odd "Oh for goodness sakes!" type rant as well! Like your dd, ds also has awful problems with us doing his teeth... We have to distract him by letting him look at road signs on the ipad thing!!

Thanks for the book recommendation polter. I do hope that in time dh will change how he reacts. It's really starting to wear me down.

Today we went to mcdonalds, which ds loves and he really enjoyed that. He loves the food and the little toy that comes with the happy meal. Then we went to look round another shop dh wanted to go in - just the one shop, it wasn't a massive shopping centre it was one of those retail park jobbies, and they had some of those floor cleaning signs out and of course ds thought it was christmas and made a beeline straight for them! I let him touch them and have a look and after a bit I passed him over to dh so I could have a quick look at something else (as I was literally glued to the sign with ds) and that's where it all went wrong :( dh got cross with ds as he wouldn't leave the sign alone and ds of course went into a massive meltdown :(

I was literally around the corner of the aisle for all of 2 seconds and I suddenly heard ds absolutely going crazy and dh getting more and more annoying and saying "stop it!" I went over to him and obviously I had no idea what had happened as ds was fine a minute ago and dh said he wouldn't leave the sign alone! I said fine well let him look at the sign then, does it matter?! So I never got to look at anything and dh carried ds out of the shop who was still screaming and crying and upset. I then sat down outside the shop with ds and tried to calm him down and dh was in a total mood because he thinks ds is being silly.

Feeling very upset and defeated to be honest. I feel a bit like dh is almost embarrassed by ds and doesn't want other people to think he is "weird" so is trying to make him do what he wants him to do and I don't see why he can't just go with the flow.

I'm trying to cut him some slack because clearly dh is very upset and stressed (as am I to be honest) and I just don't think he realises that he is making things worse!

Eventually ds calmed down a little bit (after what felt like the whole retail park looking at us, he literally screamed the place down) we went straight home. We were going to go somewhere else but dh kept saying we "can't take him anywhere" and seemed in a huge panic / angry depressed state. Poor dd was there as well and it was all hugely stressed out.

I'm feeling really annoyed and fed up. Ds doesn't behave like that with me when I'm alone with him because I tend to follow his lead and if he wants to look at bloody signs then he can look at bloody signs. I really don't give a flying fuck what anyone else thinks to be honest. He's my little boy and if he's happy that's all that matters.

What a long day :(

I've requested a dla form. If nothing else I think it will help me to get my thoughts in order for the community paediatrician and health visitor for when we see them. It's been very useful to do some googling and see how other people fill them in, I'm reading the descriptions and thinking "yes I do that with ds" but you tend to just accept it and forget about how different it is day to day. In a funny way I'm very eager for the paediatrician appointment now because I really want to see what they say..

Thanks polter. That's so sweet about your ds and the airport! I know that ds would be exactly the same....! You're right it is nice they can take such pleasure from simple things.

The fact files were very useful thank you. Looking at the things they should be able to do I can see there are lots of things ds can't do. The bit about being able to jump at 2.5 and being able to draw etc is well out of his reach at the moment. He has no interest whatsoever in even holding a pencil or crayon for a start. We give him one and he will maybe draw one line with encouragement and then drop the pencil and run off. If there is a pack of pencils he will be more interested in pouring them in and out of the box.

I really hope the paediatrician appointment comes soon. Fingers crossed.

gosh- those fact files are really good.

Faiylea at least you've recognised that ds may need some extra support. I've spent flipping ages in denial,which just means that everyone recognises what a daft bat I am when I have to go back and mumble that maybe there might be a teeny,tiny issue...ahem.

Don't know if this helps but my dh was very against any kind of assessment ,as was I for a long time,but as time has gone on we've both slowly changed our attitudes and become more accepting and gained more understanding of how to help ds.

These things are really complicated. Ds fits bits of this and that dx but not all of anything. Things might change in the future.

Thank you guggenheim. At least you have gone back :) don't feel bad.... both dh and I swing between thinking there is absolutely nothing wrong with ds and thinking he is quite severely autistic! (Or whatever else). I think when it's your own child and you can understand their behaviours and where it's coming from its easy to overlook so much and normalise it. At least that's what I find myself doing a lot.

We took ds into town yesterday..It was the dreaded time for new shoes. He absolutely hates getting new shoes fitted and will scream the place down before they even get close to him. I would just buy them off the peg but he has very narrow feet and I worry I'd get ones that would hurt him (and he wouldnt be able to say) so we try to get them measured. Even if I get ones from tesco or whatever he will usually have a screaming fit and refuse to even try them on!

This time amazingly wasn't too bad... It started off awful as usual. Loads of screaming, us trying to calm him down and bribe him with a cookie etc (!) He was having none of it. Everyone else in the shop staring at us etc.... but the woman who fitted him was lovely. She asked if he had had a bad experience with fittings as he seemed literally terrified so I said he had mild autism and sensory problems and struggles with it - just seemed the best response in the tense situation. She was very calm and perfect with ds who calmed down enough for her to measure (with a very arched back on my lap!) And we came out with some shoes! So that was a success.

Only dh was a bit off with me because I told the assistant ds had autism and he says "we don't even know he does yet".. I just said it seemed like the best thing to do and she did change her response really well because I said that. Dh also thinks because ds calmed down that it means he is fine and doesn't have autism? Is that right? I have no idea.

I've spent the day with ds at the garden centre today mainly looking at fire exits and fire extinguishers.

I've got the dla form. No idea if I should submit it or not. Worried the gp will say I'm being silly. Who knows.

I think we are probably in the same place with all of this! Nothing is certain - I have several reports which say that there is nothing wrong but,nothing is quite right either.

School has been a disaster due to anxiety and I hope that he will adjust and be supported so that he copes better.

We have some new bits & pieces from amazon which he really likes: a board which says 'First,next and then' with an arrow to point. He likes to tell us what is going to happen and how I bought some mini pecs boards which we can use to show feelings / events / how to behave. He really seems to like them and they help. What is sooo hard for me to understand is why he responds so well to them when he doesn't respond when we say the same thing verbally- he is a really chatty,articulate child.

As you can see,I have a lots to learn!

My aim for next term is for him to attend full time and to reduce the massive anxiety. A wild aim might be for him to stay in school and not be excluded or sent home early

I veer between wanting to shout 'he has additional needs' from the rooftops and trying to stay chilled out.

Yes very similar place here too....! It's so difficult isn't it. Hopefully you can get some more support so that school will be better. I am worried about what is going to happen to ds for school. That's a while off for us at the moment but he was due to start at the nursery in September that is connected to the infants school and i'm not sure what to do now. I guess hopefully we will have seen the paediatrician by then and might have a better idea maybe.

The first next and then board sounds brilliant. I find ds very hit and miss with communication too. At times he seems totally on the ball and very with it and at others seems to make sounds completely out of context and with no meaning at all. Or he will keep repeating the same phrase over and over again like a broken record until we somehow manage to "jolt" him out of it. (Usually by repeating it back to him until he stops).

I sat and filled in the dla form yesterday and posted it today. I'm still not sure whether it's right to apply so early or not but reading everything online it seems it's not based on diagnosis just that you can show they have more needs than an average child of their age. Ds definitely does. So who knows. I am scared the gp isn't going to back me up if they contact her but on the other hand she must have felt he needed some extra help or she wouldn't have referred him to the paediatrician at all.

I spent all night doing the form and explaining things as fully as I could. Fingers crossed. The money would be a huge help for us and would dramatically improve ds quality of life.

Today has been a hard day. .. I had to take ds into town with me to photocopy the dla form and it took quite a while as there are so many pages. He hated waiting around and so I stood outside with him where he could play with the signs outside the shop and he kept trying to run off to the other side of the road to look at more signs (the ones shops put outside the front). He had his reins on but if he didn't have he would have been off into the road. He then just kept repeating words all the time like "signs... look at signs... signs. ." Over and over and over. I feel really exhausted.

Having a child like ds is a bit like having to be super mum all the time. I never have any down time. Thankfully he does still have this very rigid routine with his nap every day so I can have a tea in peace then.

I can't allow myself to think any further than each day at a time at the moment.

Hi, been away on holiday so hadn't looked at this post. Yes,Supermum it is!

Ds loves a nice sign outside a shop too.sigh.

Very interesting how the visual supports work,I don't really understand why they make such a difference but it seems to get the point across. The mini pecs boards are great,people look when I use them but since they are hidden in the palm of my hand they have NO idea about what has just happened : )

I haven't applied for dla because we have so little information on Ds and several bits of paper from experts saying that there is nothing wrong. On the other hand,I've had to take lots of time off work (very part time job) to care for ds since they can't cope with him in school full time. Obviously this is not how they have expressed it. He needs different bits of equipment but they are only minor and seem optional,unless you have a child with sensory difficulties.Will have a rethink as the term goes on.

Hope it all goes really well fairylea
poltergoose you are amazing,thank you so much for all the help and advice you give on these boards.